Tuesday 31 January 2012

Commenting

Dear All.
I am terribly sorry for the Google Login setting that meant you had to have a Google account to comment. I have fixed this error and now Aynone can comment.
However if you have any problems, you can email me (Alison) your comments which I will be happy to place for you, either with credit or anonymously.
Once again, apologies for my mistake.
We truly appreciate all your comments,
You are the reasons we are doing this blog.

Best wishes, Much love and Blessings
The Tinkerbelle and Hummingbird M.E. Blog

©TheTinkerbelle+HummingbirdM.E.Blog

Wednesday 25 January 2012

Blog 2; Adrenaline Surges (January 2012)


Alison/TINK: Hi there bloggers. Firstly, may we thank you for visiting our blog for our very first official discussion post. We are so excited to share our personal experiences with you, and hope that you will share yours with us too.

For our first blog, Jodi suggested the topic of 'Adrenaline Surges'. Of all the papers that she has published on the wonderful HFME, the one on Adrenaline Surges has had the most positive feedback. So I thought her idea of this being the first blog discussion a great idea. Everyone knows that overexertion makes M.E. terribly worse and can even kill, but few understand the role that adrenaline surges play in making overexertion so difficult to avoid in M.E.

Jodi/HBIRD: Hello everyone and thank you Tink for coming up with the idea to do this blog together and doing all the work in putting it together! I'm very excited about it and hope readers find it helpful and interesting.

And yes, as you just said Tink, adrenaline surges are one of the best and worst things about M.E.

They provide a way for our bodies to cope with overexertion in the short term and they can allow us to attend events that are very important to us (such as funerals, weddings and medical appointments) which we would normally be too ill for. Unfortunately, they also let our bodies 'write cheques they can't cash' and are the reason why so many of us are severely affected. The payback for each adrenaline surge is just so enormous and so prolonged. It can be tempting to rely on them for a while especially when you are first ill, until the whole house of cards inevitably falls down and you are far more ill than when you started, possibly for months or years afterward.

Alison/TINK: Absolutely. People often think that if you are feeling well enough to do something, whether due to an adrenaline surge or a moment of rare capability, that you are indeed well enough. However, this is not always the case.

Adrenaline surges sometimes remind me of anesthetics. Just because you can't feel the damage of what you are doing, that doesn't mean you are doing no damage. After the surge wears off, like an anesthetic, you will feel the repercussions of what you did.

You know, one of the things that worries me so much about many M.E. sufferers, is that so many are uninformed. Most of this is that they are simply too ill to study accurate information on their illness, and by that I mean not the immense amount of complete nonsense that is on the web. But adrenaline surges are one of the least known symptoms.

I know for me, HFME is where I learnt about them. And it totally made sense to me.

Personally, the way I know I am having one, is that I tremble and feel 'antsy'. For me also nerves can bring on an adrenaline surge. I don't get nervous often, but when I do it's usually for no reason at all and certainly brings an adrenaline surge on. And trying to do little fiddly tasks quickly. But if a sufferer does not understand them, it can be so dangerous.

Are there things that bring yours on Jodi? Are there things you do once you feel one coming on to try to limit it?

Jodi/HBIRD: Too much computer time is the main thing I have to be most careful with avoiding adrenaline surges, it is so easy to get wrapped up in what you are doing and lose track of time! Visits with friends and family are also an issue, it is hard to remove myself from a social situation after a short period of time, especially with an adorable new baby in the family now.

I know I'm in an adrenaline surge when I start talking really fast and talking way too much and too loud. I also tend to sit up much more than I would usually as I'm so filled with adrenaline that lying still can be quite difficult. I sometimes tremble a bit as well. All I can do to limit it is try really hard to not sit up, and to withdraw myself from the situation as quickly as I can, which is hard to do at the best of times but even more so when you are all adrenalined up and feeling very bubbly and over-enthusiastic!

Alison/TINK; Absolutely. I feel it is so important for people with M.E. who can have a strict schedule, to do so. I understand those whose rhythm's are too unpredictable can't, but for those of us who can, it goes a long way to minimizing symptoms getting worse, either in the short or long term. As you have said, this can be terribly difficult, especially if you are feeling able to do things, like one can when having an adrenaline surge. But I find setting alarms a big help. I use my phone so I can choose the sound that is least imposing on my head. I also do the same with visitors. I was brought up with propriety to the extent I find I am unable to simply ask people to leave. So I have codes I suppose. I say things like 'Is there anything else that I can do for you today?' or 'Thank you for visiting today, I really appreciated it.'

I get laughed at or such for having such a strict schedule/regime/timetable. Which is very tempting to take personally. However this simply is not about me, it is about my overall health. If I want to be able to cope with my life, I need to be strict with things. If I want to speak to these people, which I do, I have to put their simply not understanding to one side. It can help to show them your wonderful papers on your HFME site, or write the people letters of your own trying to explain. This is much preferable, at least for me, than trying to mumble it on the phone. How do you remove yourself from social situations as you say, when having an adrenaline surge or other overwhelming symptoms?

Jodi/HBIRD: These days my visitors only ever visit for quite set times, so I know when they will arrive and also when they will leave, especially with one friend who catches the same time train after seeing me each time. If I suddenly feel unwell during a visit I will I will tell my visitor that I will unfortunately have to cut our visit short. It has taken me over a decade to get to this point though!

Your way of dealing with this issue in such an organised way is great Tink! Pre-planning is so important as making the right decision in the moment (while we may still feel 'anesthetized') can be almost impossible.

It is such a shame that M.E. patients' non-negotiable physical need to very carefully restrict and manage light, noise and human interactions and so on are often unfairly mistaken for a personality flaw and as being petty or 'controlling.' (But that is another whole issue, perhaps an issue for a future Tinkerbelle and Hummingbird blog discussion?)

It isn't pettiness, it is survival. Having such strict limits is something we do out of necessity, not because it satisfies an unhealthy psychological need!

Adrenaline surges are a lot to have to try to manage when you are quite ill, although I'm very lucky in that mine have finally calmed down a lot as my health has improved a little lately. I wrote most of the HFME site fuelled partly by low-level adrenaline surges but now I do it under my own steam, with only the very occasional accidental exception. This leaves me feeling much better after writing, and with better health, but unable to do some of the more complex tasks that adrenaline allowed me to manage in the past -which is a bit annoying I must admit!

It is a smaller battle now, but still a real battle at times. Adrenaline surges are also so often misunderstood by others. It can be utterly maddening! For example, when I warn a friend that I am having a bad day and may not be up to much while we have our visit, the adrenaline surge phenomena of M.E. sometimes creates an illusion of good health. I get more and more ill as the evening wears on, and when it gets bad enough that my body is in real physiological difficulty, my body floods with adrenaline and I appear to suddenly become quite well. I talk a lot and very quickly. It is frustrating but of course quite understandable that so few people can see the difference between genuine health and vitality, and an adrenaline surge brought on by a health crisis, the latter of which is anything but a sign of good health in the M.E. patient. I dont expect others to always recognize this sign of a pending relapse, but to have it misinterpreted as a sign of improvement can be hard to take!

You can read more about adrenaline surges on the HFME site.

As you just mentioned before Tink, so many M.E. patients haven't read much if anything on adrenaline surges which is so unfortunate as understanding how to recognize and minimize them is an essential part of stopping M.E. from becoming more severe over time. Good information is so vital... and so rare when it comes to M.E.! Patients need to know that calling up a big adrenaline surge to be able to do certain things only ever ends up with lots of extra pain and you being able to do far LESS in the long term. What patients really need here too is doctors that will do house calls or phone consults so that patients are not forced to deteriorate significantly just through trying to get some basic medical care. This is needed so urgently.

Okay that is it from me for our first blog discussion post Tink! Phew!

Alison/TINK: Phew indeed. And I know we could both say much more on this subject, but we very much understand how difficult reading can be for some people with M.E., so we'll leave it at that, and hope we have shared enough for now.

We really look forward to hearing how adrenaline surges affect you, and how you cope (or don't) with them, and how people's opinions on them make you feel.

I have set up our blog so that you can all comment on the stream below. However if any of you have any problems, feel free to email me  ( contactalisonlouisebell@gmail.com ) and I can post your comment for you, either with a credit or  anonymously.

So that is it for our first official discussion, we bid you all a calm day and hope that you will return for future posts. (Remember, you can request/ suggest future discussion topics on the set tab)

Note ; I have added the ability for you to follow us by email or RSS feed to make it easy for you to know when we post new discussions., and a gadget so that you can let others know by Facebook and or Twitter about this blog. The more you make others aware of our blog., the more people may be helped, be involved with us all, tell their stories, and support one another.

Best Wishes, Much Love and Blessings
The Tinkerbelle and Hummingbird M.E. Blog
x x


©TheTinkerbelle+HummingbirdM.E.Blog

Thursday 19 January 2012

In depth 'About Us and This blog'

Hi everyone.
Firstly, may we say a huge thank you for visiting this blog. We truly appreciate your interest!
Our aim and intention is to periodically discuss issues related to life with M.E. and all that brings.
We thought our first blog should really explain who we are, and how we came to be able to talk about M.E.
(Please note there is a topic reques/suggestiont tab where we would love for you to request future blog topics)

Those of you here, will be very familiar with HFME. so you will know all about the most wonderful lady who created the site and who, even given her fragile health, still works tirelessly on everything posted on its site
However, in case you are new to her story, here it is.
(Please note, a there is an 'about us' tab where this information will always be easily available.)

Hi Jodi. Before you tell your story, may I say what an honour it is to converse with you here, and also say a huge thank you from all your HFME'ers for all the hard work you do on your site!


Jodi/HBIRD; In March 1995 at the age of 19, I went from being very healthy and happy one day to having problems standing upright for more than a few minutes at a time, the next.

I also suddenly had severe problems sleeping, thinking and remembering, speaking and understanding speech, eating many foods that I previously tolerated perfectly well, coping with even low levels of noise and light and vibration, coping with warm weather, sitting, with my heart and blood pressure, with any type of physical or cognitive activity causing severe relapse unless within very strict limits as well as memory loss, facial agnosia, learning difficulties, severe pain, alcohol intolerance, blackouts and seizures, intense unusual headaches, burning eyes and ear pain, rashes (and other skin problems), severe nausea and vertigo, total loss of balance when I closed my eyes or the room was dark, muscle weakness and paralysis, and so on.

I suddenly had over 60 individual symptoms, and could only do 40% or less of my pre-illness activities. I had a textbook case of M.E. although I didn’t learn that until almost a decade later.

Living through an acute onset of something like M.E. is a bit like one day waking up and suddenly everyone around you is speaking another language and looking at you strangely for not being able to understand what is being said. At first, not only is it very hard to just accept, but also to really believe it is happening, and that it won't just go away as suddenly as it came. It's all just such a big shock.

Thanks to inappropriate medical care and advice, I, as with many other M.E. patients, soon struggled to do even 5% of the activities I had pre-illness. I was made housebound and 99% bedbound, and have remained so for the last 10 years. My heart-rate skyrockets and my blood pressure drops dramatically after just a few minutes of standing or other overexerting activity. It feels like a heart attack in every organ, and as if my heart is about to explode, or just stop. (The highest heart-rate measurement I've had is 170 bpm and the lowest blood pressure measurement is 79/59 - both were taken at times when I was only moderately ill, relatively speaking, nowhere near my most severe state. Scary.)

I have spent most of the last decade, alone and in pain in a dark quiet room, coping with many different and hideous symptoms. I accept that some people get ill, and that I am at risk of this as much as anyone. What is hard to take is that, like so many M.E. patients, my reaching such a severe disability level and losing so much of my life was completely unnecessary and would very likely not have happened had I had even the most basic appropriate support in the beginning.

Unfortunately I was told to keep doing as much as I possibly could, and also to do as much exercise as possible too, when I was first ill. It was the worst possible advice I could have been given. The greatest factor governing recovery or remission of M.E. is adequate rest in the early stages of the illness. Avoiding overexertion in the early stages is VITAL. Yet very few sites which claim to be about M.E. make this fact clear – it is maddening! M.E. is just not the same thing as ‘CFS’ or ‘ME/CFS.’

I started my ‘Hummingbirds’ Guide to M.E.’ site in around 2004 and in 2009 I decided to try and use my ‘good’ half an hour a day (on average) to try and get the facts about M.E. (including the impossible to overstate importance of avoiding overexertion) to a much wider audience and so the ‘Hummingbirds’ Foundation for M.E.’ (HFME) was founded, with the help of some like-minded fellow M.E. patients.

M.E. is at least as disabling as any of the other very serious diseases (such as M.S.) and the extremely high level of suffering and isolation it causes can last for many years or decades at a time. Yet M.E. patients get the least amount of support and compassion and such high levels of abuse and outright ridicule. Some of us have some family and/or friends on board, some have welfare, some have basic medical care (although almost none have the same level of care the average M.S. patient has). But most don't have all or even most of these things and when they do they have often taken many years to get and are very hard won. Real M.E. advocacy is very much needed right now!

[Please, if you are newly diagnosed with M.E. you must not overexert yourself, you may be permanently and irreversibly damaging your body and risking your M.E. becoming very much more severe or progressive. Getting that message out is one of the main reasons I set up AHG and HFME. NOBODY should have to live with long-term severe M.E. if it is at all avoidable. It is a living hell you wouldn't wish on your worst enemy. Around 25 - 30% of people with M.E. have severe M.E. - many of them also because of inappropriate advice to exercise. There have even been exercise related deaths. For more information see the HFME site.]

In the last few years my luck has really improved a bit I’m happy to report! My condition is now, thanks to careful management and learning a lot about healing and cutting-edge holistic medicine, very slowly improving. I’m still housebound but I am probably only 97% bedbound at the moment and have been able to start doing a little bit of cooking recently and a little bit more of the things I could do before such as computer work. I also now have a very supportive immediate family and friends. I wish every M.E. sufferer could be so lucky. I'm still desperate for a lot more improvement of course: and for that improvement to happen immediately! Life is still very difficult, but I hope the future will bring better health, at least the improvement to 30% or so that would give me at least some real quality of life.

I’ve also just published my first book on M.E. – Caring for the M.E. Patient. I still can’t quite believe I was lucky enough to have the world’s most experienced and knowledgeable M.E. expert, Dr Byron Hyde, write the forward to it! It has all been so exciting and feels a bit like a dream sometimes. I’m working now on a second book too and also have several others planned, using the papers I have already put up on the site.

Okay so that is about it from me!

Now I have finally written my intro piece for the new blog, I’m looking forward very much to writing some new and interesting things about illness, life and M.E. with the lovely Alison – I hope you enjoy reading them!

Links
To read about the new M.E. book, or buy a copy, click here.
To look at some of my hummingbird artworks, click here.
To read about the idea behind the ‘hummingbird’ and M.E., click here.
To read more about my M.E. story and experiences and so on, please see:
·         A day in the life of severe M.E. by Jodi Bassett
·         M.E. vs MS: Similarities and differences by Jodi Bassett
·         A Million Stories Untold by Jodi Bassett
·         Hummingbirds by Jodi Bassett
·         My case study

Alison/TINK; Wonderfully told ma'am. It is so sad that so many of us have had inappropriate treatment, most likely leading to more severe health. As you can see, that part of my tale is all too familiar....


My I just precede my story with saying how my heart goes out to all of the readers here…. not only because I have been or am where many of you who are M.E. sufferers are or may have been, but because you are a human being who struggle. For you to understand my empathy (rather than simply sympathy) with you I’m going to have to explain who I am and my story (well some of it ;) )

So my name is Alison Bell. I live in the UK. I am 28. I have had M.E. all my life looking back on it but I was diagnosed after a long time at about 12 years old I think.

I had stomach pain right from my first memories. We tried time after time with a variety doctors. We were almost every time told 'All little girls have stomach ache'. After a while, i saw a psychologist who said I was hiding behind my glasses. That was her answer.

I always had time off school, usually adding to one week per month, with another week or two here or there.
When i was nine, I had Glandular Fever. I lost 2 and a half stone in about 9 days. Also had 13 courses of antibiotics in a 12 month space due to Bronchitis, Pleurisy and other lung infections. During 6 months that time, I was sofa-ridden, only able to get to the toilet or to go back to bed. After 8 months i returned to school.

But this had made my general health a bit worse than before.

Then came secondary school. Still with plenty of time off.
I became bed ridden at 15. I was mistreated and sent to Psychiatrists and Psychologists, had my M.E. ignored by a so called M.E. specialist because she wrongly assumed I had Anorexia.

I, now with a different so called M.E. specialist, was pushed and thrusted through physio. And told the answer to my ill health, was simply, if I was a type ‘A’ person I need to be a type ‘B’ person, and if I was a type ‘B’ person, I needed to become a type ‘A’ person. That was his specialised answer for my M.E.

After a spell of tube feeding in hospital, I became improved enough to enter the world again, but within 6 months was bedridden again. And worse than ever.
And have pretty much been here ever since.

My muma was my carer all my life (I as well as M.E. have 10 different stomach illnesses, hypermobility (an illness that means the mechanisms that hold your joints in place don't work so you get lots of dislocations and subloxations) psoriasis, and now also have osteoporosis toboot. She was not only my carer, but the only person that could look after me as I was incapable of coping with everything that comes with being in the same room with another human being (ie their noise, even just their breathing, their movements etc etc). She would bring me my 70 odd average tablets a day, my water and my food, help me clean with babywipes as I couldn’t cope with washes, let alone showers or baths. But she was more than my carer. She was my friend, and the smile in my heart. She died when I was just 19.

My father who I didn’t get along with, had to become my carer simply as he lived in the same house as I do.
Long time later, a huge amount of trials and tribulations,  and here I am. And I am glad to say, over this last two or so years things are slightly easier. I can still only cope with a visitor when on Pethadine, am still housebound, still either laying in bed or propped up in a special chair with pillows, etc. (But I can now sit up at times, where as I couldn’t until then) I can now at times use the net, (inc facebook, twitter email etc) but only cope with these contacts again when on Pethadine. I can write a little, which I was unable to do for a long time, till then it was just an odd signature when I had to on medical doc’s etc. I can now type a little etc. but the biggest thing I can do now, is think a little.

People without M.E. can wonder how a person can not think. But a brain illness will do that to you I guess!!

When I was seriously ill enough to be at deaths door, I remember watching tv (tv is the only thing I can do in pretty much any state, if it is using earphones (to separate the outside world noise to that from the tv, and with not only the colour turned down, but the contrast too) (note I watch films mostly as you know what to expect from a film whereas random tv is unpredictable, but ones that I regularly watch and know what I’ll be getting, I record to watch at leisure, and i find watching tv easier than listening to audiobooks as it needs less concentration, tho I listen to audiobooks before I go to bed. Note I have lots of online sites I can recommend to download films to watch for free)... sorry, back to point, I remember watching tv when literally almost at deaths door, and seeing an interview with an M.E. sufferer. He said he had to rest for a week before and a week after to be able to do said interview and that he was seriously ill with it. I also remember seeing another interview with an M.E. sufferer who said she used to have it seriously but had gotten well enough to do things In the world again. I remember a flicker of a thought that sounded like ‘if you ever had it as badly as I have, you would never have gotten better’. Yet here I am. I will never be well. That’s pretty much for sure. And I don’t hold much thought that I'll enter the world much again. But right now, like this, my world is somehow, manageable.

I am in my room on my own enough enough to be peaceful, which Is a great deal to do with how I cope. But I get enough contact time with people on my regimented Pethadine nights (every 4 or 5 days, so usually a Monday, fri, wed, and repeat) to not become a recluse.

So in my little world here I am. Able to cope, given the right circumstances (being solitude, peace and quiet etc.

Since writing all of the above earlier this year when Jodi and I first spoke about creating this blog, I have had a severe relapse. I have lost almost all of the abilities that I had gruelingly worked for. However, I am proud of what I achieved and know it was most worthwhile and will stand me in good stead.
I also believe things happen for a reason and that maybe, just maybe, my relapse has happened so that I will do better work in this blog and the field of M.E. advocacy.

If there is anything I can do, I AM HERE. These are no words for comfort, or a pity gesture, nor merely meant when written. As long as I am here (which with having M.E. is never certain, not that any life is) I will be here for you, or any of the people commenting on and/or reading this thread.

Please note however, any of medical M.E. bits I will forward on to lady Jodi as her knowledge precedes anyones!

So here are my contact details, for you, or even any of your family/friends, be it m.e. sufferer, relative of a sufferer, or simply someone trying to learn.

Email contactalisonlouisebell@gmail.com
Mobile for text or voicemail 07971151438 (remember I’m in the UK, for international it’s +447971151438)
Fax 02083315042 (International 00442083315042), (headed PRIVATE FOR MISS A L BELL as my father passes them to me from downstairs and some are medical docs so this will make sure he wont read yours)

So, now that you all know who we are and how we have come to be able to talk about life with M.E., we hope that you will return to read and comment on our discussions on this blog in the future.

We hope that reading this hasn't been too taxing for you (Many apologies for its length) and we hope to get to know you all in time.

Best Wishes, Much love and Blessings
The Tinkerbelle And Hummingbird M.E. Blog




©The Tinkerbelle + Hummingbird M.E. Blog